Words

When I look back on my childhood as a trans, queer, autistic, mentally ill and disabled little boy, I often see the things that were missing. The problem with hindsight, always, is that it can only occur late, very late or far, far too late.

What was overwhelmingly absent, what I desperately needed was WORDS. I lacked the words to articulate my trans, queer, disabled reality. And that makes me angry, even now. Because in many cases those words existed but were kept from me. In other cases, people like me are still working to cobble together words for who and how we are, in order to communicate in a language that wasn’t built with lives like ours in mind.

If you aren’t already nodding your head in familiarity and remembering the times when you couldn’t or can’t articulate who and how you are, then please try to imagine what it’s like. To exist in a world where there is no word you’ve ever heard of for you, where what you are or how you feel or how you experience the world is so unthinkable, so unimaginable, so (it seems) impossible that there are no words for it. You are unspeakable. You exist but… the never-ceasing feeling that maybe you ought not to, maybe what you are is never spoken about because it’s bad. Wrong. Not allowed. Not okay.
Nobody knows that you are how you are. You feel like you should tell someone… and at the same time that you definitely shouldn’t. You don’t have the words for it, anyway. Nobody seems to have the words. You can’t exist.. and yet somehow you do.

I have felt this way about being trans. I also felt this way about being bisexual. And having developmental disabilities. And experiencing mental illness as a child. Even as an adult, I am still not always sure that who I am is “allowed” or “okay”.
From my teens and into the present, I found myself tinkering with words to try to get a handle on who and how I am. To try to communicate it. To try to validate it.

Sometimes that means grasping tight onto existing words like “man” and “love” and “sex” and “independent” and forcefully insisting that my life can validly form part of the meaning of those words. My gender is man, love and sex are part of my relationships with my partners no matter what their gender, I am independent because I see that my own needs are met by ensuring the provision of carers and equipment.

Sometimes I need vocabulary I didn’t have before. Concepts like “trans and cis”, “neurodiversity”, “the social model of disability”, “intersectionality”, “heteronormativity”, “structural oppression”, “sensory overload”, “stims”, “meltdowns” “selective mutism”… become necessary to my continued understanding of myself, my life, the world and my place in it.

As a child, words to describe my own disability were few. Words to describe relationships and feelings other than heteronormative boy-meets-girl were even scarcer. Words to articulate mental distress were not available to me. Words to even begin to understand my gender as a trans little boy? I had none.
Lacking these words did not prevent me from experiencing myself as a disabled and autistic, proto-bisexual, transgender little boy in increasing mental distress.

All it did was make my life more frightening and unpredictable as things happened to me that I could not explain, I had feelings I did not know how to express and I did not know how to get any help or guidance from the adults in my life because I had no words to explain what was wrong.

I scoured fiction and nonfiction books and TV shows for validation, looking for someone, anyone, who was “like me”. I found the occasional gay person or mention of the possibility of same sex relationships. I found a few fictional characters whose mental distress echoed my own (though they never had anything that was canonically acknowledged as mental illness). The fictional wizards, demi-gods, cyborgs, mutants, faeries, changelings, aliens, rebels and rejects of my childhood reading felt more like me than anyone real I ever saw on TV or heard about in school. Erasure of trans and bisexual realities left me feeling alone and alienated. The sparsity of realistic representations of autistic people kept me feeling broken and unreal. I’m scared of over-stating this but also when I look back at my teenage years I mainly see a child who didn’t know how to be because he lacked the words to express himself and no way of knowing that being someone like him (like me) was an okay thing to be.

When adults won’t talk about same sex relationships or LGBQ people or trans people to and around children, this is what it does to LGBT children. When disability is a taboo topic and disabled people are rarely the heroes of their own stories, this is what it does to disabled children. When autism isn’t identified and autistic reality isn’t treated as valid, this is what it does to autistic children.

When children are living in a world of structural oppressions, some of which they are themselves facing, and the adults around them do not acknowledge that this is happening; this is what it does to those children.
Not telling children that LGBT and disabled people exist will not stop them from being LGB or trans or disabled. It will only make things harder for them if they are and harder for their LGBT and disabled peers if they aren’t.

This is a structural problem, built into what we teach in our schools, read in our books, watch on TV, who we hang out with and a million tiny-huge other things as well as what we each say (and don’t say) to the children in our lives. It can’t be fixed with a conversation here and there or a special book or Special Episode. But we have to try.

To be entirely clear:
This isn’t about my parents or my teachers (though it is a bit about Section 28). It’s about the society I grew up in and the resources that were and were not available to me as a child. If you’re reading this as a personal attack, I’m very sorry to have upset you but it really isn’t one. This blogpost describes what it was like to grow up trans and bisexual and disabled in 90s and 00s Britain. I hope it doesn’t describe growing up in 2010’s Britain as well.

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Benefits Update

A full 16 months after I applied for ESA, I’ve finally got an answer. I’ve been put in the Support Group which basically means that I don’t have to work or seek work because I am too ill and disabled to be reasonably expected to try to find work that I can feasibly do and employers willing to make the many, many adjustments that would be required to make that work accessible to me. After literal years* of financial insecurity due to disability and ill health (including times when I had no money of my own) I finally have something resembling security – money to replace the employment I cannot be reasonably expected to seek or find until and unless I get much less ill (unlikely to happen as my physical illness is chronic and incurable and my mental illnesses are chronic and not responding all that well to treatment) or society gets MUCH, MUCH less disablist and much, much more inclusive and accessible (more likely to happen but still years away). I view it as somewhat akin to compensation – money to live off in recognition that between my body and the society I live in paid job opportunities for me will be close to non-existent but I still deserve to live a good life.

So, what now?
I’ve bought quite a few things lately that I’ve not been able to afford for a very long time – a mobile phone that actually works, a winter coat, new shoes, a Blue Badge and a Disabled Person’s Railcard. It feels odd both to have these things and to know that I can buy such things without worrying about whether I can also afford to pay my rent. This security is unfamiliar to me, I find myself still acutely aware of when each payment is due to come in and when my rent and direct debits are due to go out.

As I don’t need to look for or get a job, I’ll have a lot of free time. I’ll definitely be blogging and I’ve got some great ideas for posts lined up. I’m trying to get back into reading regularly and I want to write more fiction. In fact, I have the slightly ambitious aim of writing the first draft of a novel this year (I’ve written novels before but not since my teens). I’m also looking for very, very part-time volunteer activities in Manchester feel free to contact me if you’ve got an opening you think I could fill 🙂

In the medium term, I’m on a few NHS waiting lists to hopefully get some treatment for my my mental illnesses. I don’t expect to be “cured” but there’s a lot of scope for improvements in managing my illnesses and maybe even reducing my symptoms. A man can hope, right? Learning how to make a phone call without breaking from fear and panic, for example, would greatly improve my life and it’s a goal that is ambitious but (I hope) achievable.

Even longer term, I want to be a parent. I’m hoping to be on the adoption register as a potential adopter before I’m thirty. In order to get there, I’m going to need a few things I don’t have yet: a permanent home with at least one spare bedroom, more local friends than I have now, possibly a wheelchair and/or a service dog. I’m not hugely sure how to go about getting these things sorted but not having to worry too much about continuing to afford to eat and pay rent frees up a lot of time and energy for planning the little steps to the bigger goals. And I know what my big goal is: to be a good parent to at least one someone who didn’t get a great start in life.

So, that’s where I am. Right now I’m still pretty poor compared to most people but I don’t have to worry too much about it any more cos (for now at least) I know that I will have a regular income and that my rent will be paid. This means I can concentrate on other things. Which is something I’ve not been able to do for a long, long while.

*I’ve been trying to apply for DLA / PIP and ESA since 2011, the present year is 2015.

Born This Way?

I’ve written and deleted four drafts of this post already because this is difficult to say and because I don’t want to keep sounding exactly like a philosophy graduate here. There’s some complicated stuff to unpack and I want to keep this blog as clear and accessible as I possibly can – especially on this because I think this is really very important.

So. It seems to be quite popular these days to assert that LGBTQ people deserve equality because we were “born this way” and can’t help or change how we are. I really hate this line of argument, I would like it to go away and I think it’s bullshit.

I happen to believe that was, in fact, born trans. I think there is something about my brain structure that caused me to regard myself as the same sort of a person as the boys and men around me and as a different sort of person from the girls, women and androgynous people around me. Whilst I believe as I have touched on in previous posts (here and here) that I had a choice about when and how and whether to come out as trans and transition, I believe that I had no choice but to be trans. My brain, my body and the society around me determined that from the very beginning of my life I would regard myself as a kind of person others did not think I was.

Similarly, I was born autistic, dyspraxic and dyslexic in that I was born with a brain and body that deviates from the “typical” human brain and body into a society that is built on the flawed assumption that everyone is or can become typical. I did not choose my brain any more than I chose my eye colour. G-d or nature or chance or evolution gave me that brain – a brain which differs significantly from the norm in ways that the society that I live in often cannot accommodate.

I was not born mentally ill (though I may have been born predisposed to mental illness). I was not born with fibromyalgia. I was not born Jewish – I chose it. And regardless of whether or not I was born innately bisexual, I actively choose to maintain a proud bisexual identity (even though it’s hard).

What I’m trying to say is: some parts of who I am have always been there, some have not, some parts I actively chose, some I had no choice in.
All should be respected.

Not because “he can’t help being that way”. Not because “he was born like that”. Not because “he has no choice”.

Because I am a human being like any other and I deserve to be treated with respect, justice and compassion. I am a person, whether I am “just like you” or not and whether or not I choose to be different.

Whatever my gender, sexuality or disability was caused by, whenever it first came into my life, whether or not it has ever or will ever change, whether or not I could change it if I wanted to… none of that matters if the question is “Do I deserve just and equal treatment?” The only thing that matters is that I am a person and therefore deserve to be equal with every other person. We all deserve liberation. We all deserve not to have to beg for it.
It doesn’t matter WHY I’m autistic or WHY I’m bi or WHY I’m a man. I just am.

I am a person. I am your equal. “Born this way” or not.

BADD – People don’t listen

If you’ve read my blog much or know me in real life, you’ll have gathered that I differ significantly from some platonic template of “Humanity” in a number of socially undervalued / undesirable ways – which is to say that I’m disabled.Humans are all really quite different from each other and we all accept that – but some differences are seen as deficiencies, as problems, as wrongness. Part of the social model of disability is the idea that it was never set in stone which differences would be considered just differences and which would be considered problems. More excitingly, it still isn’t set in stone. Some “problems” can cease to be problems.

My body and my brain deviate from “standard issue” quite a bit. Increasingly, in fact. I have never been and never will be what is currently understood to be “normal”. For the most part, I’m okay with that.

Other people aren’t. They won’t all admit it but a lot of people seem to find people like me – disabled people – pretty disturbing. How do I know this when most other adults won’t straight up call me freak or cripple? I know this by people’s reactions when I talk about my impairments (i.e. the differences about my brain and body that my society considers to be deviations and problems).

When I talk about my autism, dyspraxia and dyslexia, I tend to be fairly upbeat and straightfoward. I like my brain, I’m used to how it works, I am in many ways a master of using it to learn and I know how to turn my differences into advantages. Whilst I wish there’d been more support for me when I was a child, for the most part I enjoy my neurodiverse brain and I get on well with it despite the difficulties I have navigating a world that wasn’t really designed to accommodate people with brains like mine.
When other people hear about my autism, dyslexia and/or dyspraxia, they say things like “I’m so sorry” or “That must be really terrible for you”. They use words like “suffers” to describe my life with my brain and they tell me I’m “really brave” and “an inspiration” for getting a degree. Basically, they treat my life long learning differences as though they are inherently and always a bad thing. They talk over me and instead of listening to how I feel, they end up telling me how they feel and how they think I ought to feel.
They are scared and sad and confused. They don’t want a brain like mine so they imagine I don’t want it either. But I like my brain and it would be scary and sad and confusing for me to contemplate having a brain like theirs instead.

When I talk about my chronic illness and the physical limitations and pain and tiredness that go along with it, I still expect people to agree with me that chronic illness is awful and to be sympathetic. This isn’t usually what actually happens.
When I talk about my chronic illness, I talk about constant wide spread pain, persistent exhaustion, unfulfilling sleep that nontheless takes up 11 or 12 hours of my day. I talk about the sadness of seeing my ability to walk slowly fade away, the fear that words like “incurable” and “progressive” fill me with, the grief of having to contemplate that I will likely never walk without mobility aids again. I talk about not having enough energy to walk to and from the campus shop, of having to cancel plans with friends because I’m in too much pain to get out of bed. Frankly, I talk about how this is my lot in life and G-d seems to be taking the fucking piss by giving me all this to learn to live with.
People nod and look concerned and then tell me I need to exercise more. Or eat more fruit. That a “strapping young man” like me should be off playing football. That I should get out more or see more people. They suggest alternative therapies and guilt-trip me later for not trying them. They suggest the “obvious” healthy living advice (more exercise, better food, positive thinking) as if I wouldn’t have tried that first. They tell me to look on the bright side, they insist without evidence that a cure will be found soon, they outright tell me I could walk fine if I just tried harder. Again, people talk over me but this time it’s to minimise my experience, to make it sound less painful, less awful and more easy to fix. They never tell me I’m still valuable even if I can’t work, they tell me I’ll soon be able to work. They don’t tell me “That sounds really difficult to live with” they just insist that things will get better soon.

When I talk out my mental health problems, people don’t even know what to say.

All I can gather from this, years’ worth of evidence from countless conversations is that people have their own ideas about disability and illness and they’d rather believe them than listen to my actual experience. They’d rather believe that learning difficulties are awful and tragic than accept that I love my brain and they’d rather believe that chronic illnesses are temporary, easily cured and never affect the young than listen and help me with the grief that is forming part of my process of adapting.

I want to end on a positive note so I’d just like to say thank you to everyone who has ever listened to and accepted my own thoughts and feelings about my experiences of my impairments. You’re rarer than you should be and you make me feel like a real and valid person. Thank you.

YetAnotherLefty Celebrates 1000 Ausome Things

I’m going to choose just one thing that is “ausome” (awesome) about being an autistic person in the twenty-first century.

And that thing has to be Autistic Community and Culture.

For me, being autistic means never, ever being lonely. I know that sounds strange, I know that people think of autistics as “loners”, I know we struggle with the day to day social interaction demanded of us by others, I know many of us found teenagehood and young adulthood hell. I’ve been lonely and I’ve felt condemned to it myself – but not any more. How can I feel lonely when I know that more than 1% of people – maybe even 2% of people – have brains that work like mine? When I’m melting down in the supermarket, there’s probably three or four or five other people there struggling not to melt down themselves or at least knowing exactly how I feel. When I flap my hands in delight at the beach, there must be a dozen people there who do the same or wish they could express themselves in the same way. As I walk around my University campus, I do so in the knowledge that hundreds of other autistics are doing and have done and will do the same.

I feel like I’m a part of something. A community, a tribe.

We have our own language – of flapping arms, rocking bodies, hums and buzzes and shrieks, words repeated over and over and over, phrases and facts plucked out of the air for just the right occasion. We understand each other, even if others haven’t learnt to yet.

It’s through the internet that this culture and sense of community is growing. We connect with each other here, talk about our experiences and name them – stimming, meltdown, echolalia, aut-dar. We have words for things we didn’t know we needed words for – neurodiversity, NT, “Nothing About Us Without Us“, self-advocacy. We have people *like us* we admire, role models of autistic adult hood to follow so we know we don’t have to stop being ourselves when we grow up. We have people like us who we know – found all across the world – people who will listen and understand and help when we are struggling and celebrate with us when things go well.

Autistic community was a life-saver for me. I found open arms ready to welcome me (without assuming I liked to be touched) and people who could say “It’s okay, you’re okay and you don’t have to change any way you don’t want to change to grow up. You’re an amazing human being just as you are”. People who would make suggestions on how to get a good teething ring as an adult, who’d say “It’s okay to leave the supermarket with only half your shopping if you’re going to have a meltdown”, who’d affirm “Yes, that’s a good idea” when I suggested making myself step-by-step picture instructions of my morning routine because I kept missing steps.
I needed this alternative way to be an adult. I know there are hundreds and thousands of teens and young adults who need the same advice and help and welcome.

I’m @AutistLiam on twitter and I am there for any autistic person who needs some support and advice. Because we’re a community and that’s what we do.

Check out the other blogs people are writing today here: http://autismpositivity.wordpress.com/ The list of participants is your guide to the many people out there who love you and want to help.

Access needs – not what people seem to think they are

So, unless you’ve genuinely never come across disabled people’s activism before, you probably have a vague idea that there are different models of disability and a rough grasp of what the Social Model of Disability is. I’m not going to assume any prior knowledge here so consider the first part of this post to be a quick intro / catch-up lesson on the Social Model. Skip intro.

Two Models of Disability

There are more than two models of disability that people have come up with but there’s two directly competing models which underpin most people’s ideas of what it means to be disabled. Whilst no one actually thinks that any particular model is exclusively right for all disabled people all the time, to a certain extent you can tell what model(s) a person has internalised from what they say about and to the disabled people they encounter.
The two models that underpin most people’s thinking are:

  • The Medical Model – disabled people are disabled because they have bodies and/or brains that do not work properly. The way to solve this is to “fix” the individual person’s body/brain until it functions normally or at least looks like it functions normally. It is sad that some bodies/brains simply cannot be “fixed” in this way and those people will be unable to fully participate in life because of they way their bodies/brains work.
  • The Social Model – disabled people are disabled because society has been built by and for abled people and in a way that actively excludes disabled people. Buildings, policies, cultural practices and everyday objects have been created with a false norm of human ability in mind. This norm can and has changed – the normal human is now expected to be able to read (making those whose brains do not find reading easy excluded) and glasses are inexpensive and easy to wear (meaning people who would have been regarded as blind a century or two ago an be fully included). The solution is to challenge and change the norm to include everyone, with no expectation that all adult humans will share some particular abilities and products and practices designed with the intention to include as many people as possible. In the mean time, making adjustments to practices, spaces and expectations to intentionally include whose who are often excluded – for example providing large print menus in a cafe, hosting autism friendly film screenings or rearranging a meeting to a space that is already wheelchair accessible.

The essential difference between these two models is where they locate the “problem” of disability and where the solutions. The medical model places the problem of disability on the individual – it is their body that is wrong where the social model places the source of the problem with society for not trying hard enough to be inclusive. The medical model places the responsibility for solving disability into the hands of doctors and doctors alone. The social model places the responsibility for solving the problems caused by disability onto every single one of us to do what we can to ensure that we are not accidentally shutting people out.

For more on models of disability, try this art piece by Ju Gosling or browsing the various models on this site or reading this booklet.
There’s a lot more information available on the internet about the various models of disability.

Right, having gotten through or skipped over my badly-worded intro to models of disability you can now get to the main post.

I’m a disabled person, I’m also a student and an active participant in my student union’s politics as well as it’s social events.My SU, the NUS as a whole and my University all currently have policy that says they support the social model of disability. This means that they have policy which says that they do not consider disability to be an individual problem to be worked around by the individual disabled person but a societal problem that it is up to everyone to work to solve.

So far so good. Yet, in my dealings with all three institutions, the University, the Union and the NUS, I’ve seen a pattern of actions that suggest that whatever model of disability they’re using it isn’t the social one.

This pattern concerns asking people what their access needs are.

Asking people what they need is a good thing and I commend the Union for asking all candidates for the recent elections to provide their access needs and the NUS for asking this of all those who attend their conferences BUT in both cases this question was asked of people who had little or no idea of what they were going to do and so no way of working out what they would need in order to access the election / conference. My University does not ask all of its students for their access needs but does ask those who identify themselves as disabled – again usually before they have any idea what their course will involve and can only guess what kind of help they will need.

What follows is often a very inaccessible event where the Union / NUS / University can say “But we asked you what you needed and you didn’t tell us!” or “But we did what you asked us to do!” and claim that they have been as inclusive as they possibly could be.

This betrays that the people who ask the question “What are your access needs?” don’t really understand what they’re asking and are possibly slipping into thinking of “disability” as an individual’s problem caused by the way their body works. Disabled people do not have handy lists of our needs that we can email you as the answer to that question and it would be useless for us to try to make such lists in the first place.
Why? Because I don’t have access needs full stop, I have access needs with reference to particular activities. I can only tell you what adjustments and help I will need if I have been given full and clear information about what I will be expected to do. Without this information, I am left guessing and asking myself things like: Will they expect me to stand for more than five minutes? Or navigate a crowded room on my own? Or walk up and down any stairs?

I’ve run in student elections here and helped other people to run. Apparently, the organisers of student elections here thought they could assume that all candidates could: walk down a flight of stairs, climb onto a two foot high stage with no steps, get themselves home late at night, be at events every evening for over a week, see powerpoints that were not described, stay for hours in a loud, crowded room with flashing lights etc etc Am I to guess that all these things will be expected of me? I don’t think they are reasonable expectations at all – and those expectations are  disabling.

Actually following the social model requires being actively inclusive – making sure every event is as accessible as possible. Which means ground floor level access, no assumption that every one can read the powerpoint, making sure people will be able to get home from late night events, making sure you’re not expecting people to repeatedly attend both late night and morning events, all speakers using the microphone, sensible volume of music and somewhere quiet set aside to go, seriously questioning the use of flash photography… Yes, it requires a lot of thought and it seems easier to just lay the responsibility with the disabled people themselves but really when you won’t put the thought in to make what you do as accessible as it can be, the message us disabled people take home is that we’re not really wanted and your event isn’t for people like us.

So, to sum up:

  • Put thought and effort into making your event as accessible as you can to begin with.
  • Get out as much clear and detailed information as possible about what will happen at the event in advance.
  • Include specific information about access in advance. Use something like this access statement generator.
  • If you know who is attending the event (i.e. candidates, speakers, delegates etc) provide them with all the access information and event information and ask them to contact you if they need any access adjustments or want to clarify something.
  • Make sure all possible attendees know how to contact you if they need specific adjustments you’ve not already thought of or extra information about access.
  • Congratulations, you will have done the bare minimum in actually following the Social Model in creating your event.